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Author
Topic: My Story (Read 7963 times)

On May 23rd 2012 at 3:15pm i was diagnosed as HIV +, i thought my life was over....

Id gotten a cold just before my birthday in April and brushed it off as a regular cold, went about my life as normal, i started losing weight, hot and cold flashes, the works, my partner kept telling me to go to the Dr but i kept telling him "Oh its just a cold". about a month of this went by and i wasn't feeling any better so May 23rd i woke up and was having trouble breathing just walking to the bathroom (a 7 ft walk from the bed) and decided OK ENOUGH IS ENOUGH. My moms a nurse and she and i figured i had pneumonia and i needed to take care of it asap.

I got dressed and told my partner before he left i was going to the ER then to work just as he was leaving for work in the next town over. He kissed my forehead and told me he loved me (little did i know it'd be the last time for a long time) and i left (dressed comfortably but highly inappropriate for the public, but it was 102 out and i didn't care). I drove the local er and told them i had pneumonia and needed to see someone BC i was having trouble breathing. Answered the usual questions and they put me on O2 to help me breath. Made me spit in a cup and pee in another, did a chest x-ray and drew some blood for a multitude of tests (looking back i laugh at how bad i cringed when the nurse stuck me with the needle, i hated needles)

The nurse came back and told me that i was right, i had pneumonia (a pretty BAD case) and that my left lung was partially deflated and it was starting to fill with fluid, thank god i thought, but shortly after the DR comes back in, she looked sad, she sat down next to me and took my hand and literally wept, i knew something was wrong instantly, She told me i had tested + for HIV and would need to be transferred to the next city to a better hospital to treat the problems i was having (i later realized that she had NEVER had to give someone this type of news in her career, her humbling tears still warm my heart to this day)

I was shocked "HIV" i thought! what does this mean? am i going to die? OMG what about my partner, throwing their rules to the wind i grabbed my cell and called the plant where he worked directly and told the only person available that there was an emergency and i needed to speak to him, ASAP and waited for him to pick up. His voice was shaky and scared (as we had just been dealing with his dads stroke and im sure he was anticipating it to be a call about that not me). I just told him that he needed to leave work IMMEDIATELY and come to the ER back home, i sat there alone in that room for 25 mins, he came into the room and as soon as i saw his face, i just burst into tears (it was the first time id cried in front of him ever). He took my hand and i told him the diagnosis, he was stunned silent.

I asked the Dr to come back to talk with him and basically go back over it all again so i could hear it a 2nd time and he could understand it, the whole time i just sobbed. I was transferred to the next city in an ambulance. Long story short; HIV +, PCP Pneumonia, Partial Pleural Effusion of the Left Lung & Cryptococcal Meningitis.

The first CDC doctor they sent me was a rather rude Chinese woman i barely understood who treated me more like a lab rat than a person, she refused to make eye contact, barely spoke decent English and rarely talked directly to me. Until one day she screwed up an order for my Ampho B and i almost went into cardiac arrest. When the air had cleared again and all was well, this Dr came into my room wanting me to try again even tho i was against it, she also made a few "unflattering remarks" about my sexual preference that i didn't care for even if she was doing her job. I called my patient care facilitator and demanded they give me a different CDC doctor (thats putting it nicely, i have a foul mouth and they put up with alot from me during that time). But i digress...

I was hospitalized 14 days, Thoracenthesis to re-inflate the lung, Bronchial Lavage to inspect my lung and "clean it out", plus they started me on Atripla. The first few nights with the Atripla was rough, the stuff knocked me out, but the dreams were PHENOMENAL, but i was only having fun dreams then, months later i was having vivid nightmares id rather not remember (the curse of having a creative and active imagination bites me in the ass again!) Day 12 i realized i hadn't seen or heard from my partner at all since the day i told him, i called and he said he would come in asap BC "he needed to talk to me", long story short, he broke up with me and had moved out while i was in the hospital. Thanks Dick!

I returned home, depressed, alone, broke, unsure of how to go on, I have to admit i had my up days and my down days. The one thing i needed was him, his support, a hug, that was the thing i literally cried myself to sleep over for weeks, i just wanted human contact. Thankfully my coworkers at the time were there for me when i couldn't take it anymore, they'd give me a place to go to get out of my house, feed me, give me a shoulder to cry on, I truly owe them for keeping me alive after my release. I returned to work and things weren't the same, i lasted about 2 months maybe on my own and had a severe nervous breakdown one day, the bills piling up, a job that didn't pay, loss of my partner etc etc.

My mom called a friend of mine and his partner who used to be my bosses at the bar, they always took VERY good care of us back then. He called and i was amidst my 4th full-blown sobbing-freakout that day and he managed to calm me down. I wrote a list of 5 things he told me to do before the month ended. 1. QUIT MY STUPID JOB 2. GET A STORAGE UNIT 3. SELL EVERYTHING I CAN THAT I DON'T WANT 4. PACK EVERYTHING ELSE 5. GET READY TO MOVE OUT BC they were coming to get me on the 30th to bring me home with them to their house.

Alot of time has passed since i left that house and moved in with them. Yes im still here now, been about 6-7 months, i found another job that i really like, im still sleeping on a twin mattress in the office and hit my storage unit up monthly to trade clothes or books or art supplies (whatever i may need for the month ahead). And i even speak to my ex on occasion, i know he feels remorse for how he reacted and he has apologized numerous times, we are not back together (yet) and living about 40 miles apart but still try and hangout or talk when we can. He claims he has been tested twice since then but both tests came back negative, granted i wasn't there so i have no proof that he actually HAS been tested. But he is finally starting to come back around.

I don't have much for a support group to go to around here, so i created one, just a few ppl i knew in the area who have it or knew someone who did, we would get together for drinks, play games, cookout, talk and was so happy when i found the forums on here 6 months ago (Thanks to a friend at one of these gatherings), the stories i read were like having one. Today i finally got the guts to go ahead and write my story out for all the others out there who are newly diagnosed to read, ya know to do my part, and maybe help someone else, the way y'all have helped me.

I thought my life has over, i had days i couldn't (or wouldn't) even get out of bed i was so depressed. But thanks to Ryan White, Medical Card, My new CDC Doc, My Family, Friends etc. i know im going to be OK

I live in Springfield, Illinois (home of Abe Lincoln "vampire hunter") in the 217 and have met the few but many ppl who also have this disease around here, Ive fast-tracked my way thru the info & resources our area has available and am always willing to talk to anyone, just as you all have been there for me Just know, newly diagnosed, you are not alone, wherever you are no matter how it may be for your story, YOU ARE LOVED and your life isn't over! Its just time to change and become a better version of yourself. Once you get thru the initial steps and come to terms with it, you will hardly even remember the bad days you have faced or may be facing.

Ive finally begun doing my homework on the subject, downloading books to my tablet to read and such, so i can help do more for the community around here. Im always looking for good books that others have read (i kinda prefer the ones with stories in them, but i also read the basic books on the topics) so feel free to msg me any u can recommend or if you want someone to talk to.

thanks guys, i still cry just telling the story to people bc the hurt is just so painful. And thats ok, its ok to cry when you remember the bad, even if its long since past, old wounds take time to heal, im sure 10 yrs from now i wont remember half of it, but at least i found a forum to get it out there and let others know that things could be worse and that someones listening

aaron,from an older guy that has a hard time remembering what the initial impact felt like,i tip my hat to you for telling your story in such a compelling and honest way.my tears are still flowing.thank you for your beautiful and inspirational introduction!

Hi Bulldog. As others have said, quite an amazing story. One thing that shines through the pain in your story is a clear understanding that you have a strong character and are going to make it through this okay. I urge you, in a few months or even a years time when things have settled to come back to this thread and post an update. I think your experience will be able to help a lot of newly diagnosed by seeing just how well you will do.

While I wasn't diagnosed with PCP and hospitalized, when I found out I was poz my partner, though initially supportive, eventually cut and ran. We're still friends but that's it. Some people just can't deal with it.

But these experiences makes us all the more resilient and stronger, right?

Figured its been enough time since my initial post so I'd put out an update. Let me start by saying that Spinal Taps or "Lumbar Punctures" suck some serious ass, not that it was as painful as my tat but its been 24 hrs and the post-tap headache is a beast. But I'll get to that...

My ex and I are back together, in our weird little way, complicated?No, we blew past complicated years ago. I think the initial shock has passed and he's starting to accept it for what it is, as am I. We are doing our best to just take things sorta slow and I've began imposing some rules for myself to help, wanna hear them? Sure you do... I haven't gotten a concrete list yet but I joke (anyone see that movie zombie land? If not rent it, its hysterical, this kid survives and tells you his rules to stay alive in zombieland ) that these are my poz-nation rules to live by. (Feel free to submit suggestions)

Rule #3: relax and find ways to enjoy yourself, even when your not. Like hanging out with someone at first glance u didn't want to, you may just find out how much fun that person is.

Rule #2: your never too old for a little homework. seriously, if u don't know or understand something, do some research.

Rule #1: laugh hard, love often and live well. This has many meanings, take it however you need.

Back to me and j, I've moved in with him and his roommate in the next town over, and things are not so bad. I try to calmly explain stuff I know he doesn't understand and we try to make each other laugh constantly. Things are going well and I couldn't be happier (minus the headache from the LP). He hasn't outted my status to any of his friends yet but has impressed me by learning with me.

We were at a bar and some friend of his (who I call motormouth, kid could suck start a Harley he talks so damn much) who he works with was gossiping about someone we all know having Aids. J knew...he felt my awkwardness BC I don't just announce it in public to people unless I have to

Rule 5: don't be afraid

plus our other friend that night his ex was +, J calls his friend out in front of everyone about his ignorance. I have to admit it impressed the hell out of me, like when did he grow a pair? He since has been a blessing for me, makes sure I eat plenty and am always smiling, to name a few.

Yesterday, he took off work last minute to drive me 45 mins to the next town for my Spinal Tap (something my Dr and I setup a few weeks ago as a followup to check how my CNS fluid has been handling the meds). He ran to my pharmacy and got my refills while I was in procedure and was waiting to drive me home when I got out a few hours later.

Now this Spinal Tap thing,

I've had one before when I was hospitalized at diagnosis, and I was so doped up I barely remember much from that week, but I just remember it wasn't too painful (and I'm a total wuss around needles or at least I used to be). I made the choice to let the Dr order this one thinking "it won't be that bad". I learned this, occasionally while they do the procedure they may graze your "ass nerve", it didn't hurt it was weird tho. My butt cheek just contracted and my leg just sorta shot straight out. No damage or anything bad unless u count the nurse joking about how u involuntarily just kicked her in the boob full force, emotionally damaging.

The thing they warned me about was this damn head and back pain. 24 hrs later, I'm walking hunched over a little (like a 6'3 mister burns, with rock star hair and killer abs), my back is super sensitive and I have the worst migraines. Upon doin my research I've found that apparently this is common; liquids, rest & laying flat help a lot. But seriously, has anyone had anything similar before? Also has anyone taken (Sp?) Sorconazol, thoughts?

I'm glad to see I've hit almost 1,000 hits in this forum to date. I hope to keep it going and will post more "big updates" as they come.

Have all men gone crazy? i know im a little crazy but i mean legitimately CRAZY! He told me the day i was planning to propose to him that he "Loves me, but hasnt been in love with me" for some time now. Then i find out later on he has been cheating on me left and right for over a year now.

I mean seriously? hasnt loved me for some time now, how the hell is that? and why am i always the last to find out?

needless to say this wasnt how i anticipated the first of 2014 starting out. now im back on the single train and pretty much miserable again.

I have a new job at an adult bookstore where i can educate ppl about being poz, and honestly i love it. my job is a blast (no pun intended). the only downside is being stuck living in the same town as my NOW-Ex, and slowly finding out that the entire time we were back together all these ppl who were pretending to be my friend were sleeping with him behind my back. I shouldnt be so mad at them i suppose, he is a slut, he is the one who initiated it all, but honestly im madder than hell at everyone about it.

i want to move away from here. i just wish i could pick up my job and take it with me to another city, another state and start over.

I am sorry to hear about your breakup, but sometimes the best we can do is to simply cut the ties and move on. You touch on so many issues with your posts, that I almost don't know where to start.

For one, after your spinal tap, you should have been told to go home and lay vertical for at least 12 hours. I have had lumbar punctures and my headaches were so severe that I could not even sit upright. I can't believe they did not tell you how to recover after your procedure.

As for your ex, give it some time and try to curb the anger, because it does nothing but drain your soul. I had an ex, who abused me and once I left him, I hated him with every essence of my being. At first, it felt good, yet as time passed, I realized that my hating him, had only an effect on me and not him. If I insisted on getting some kind of closure, that he was unable to provide, he would still hold power over me. I found my ultimate closure when I forgave him, for what he did to me and forgave myself for my part in the abusive relationship.

Once I forgave both of us, the anger subsided and I moved from hating him, to accepting that,he is who he is and he is no longer of any importance to me.

I guess the last point I want to make is to be sure, that if you are contemplating moving, make sure it is for the right reasons. Sometimes, wanting to leave a certain place, becomes more of a "geographic cure", without realizing the challenges that a new area represents. It does not sound like "where" you live is the issue, but rather your feelings about your life right now.

All of this is perfectly normal, but might I suggest you give yourself time to adjust to your new reality. You are going through a lot right now, so be kind to yourself and that includes your body, mind and spirit. I empathize with how hurt you may feel right now and generally, when we are under stress, we tend to not make the best decisions.

I say give it some time, to sort it all out and then see where you are. Until then, feel free to share and welcome to the forums.

So it seems my doctor is very ANTI letting me control my own treatment options. I have asked for a switch to complera (currently on atripla and not a fan of the side effects) and he always says NO!I have asked for lowest dosage of Xanax possible to help keep my nerves calm bc i get worked up and irritated VERY easily, he said NO (bc he thinks i will abuse them, which is crap bc i know ppl who get the highest dosage and pop em like tictacs and i merely want a lowest possible dosage to settle my nerves, i dont even plan to take the pill whole, usually when i take them i take a half at a time)I have been very vocal about the fact that i smoke marijuana as well with him, seeing as its now on the list for Medicinal Purposes but just like the others he always says NO, why you ask? bc he "Doesnt approve of the use". I get thwarted at every turn with this guy and im starting to get sick of it.

If that isnt enough irritation for ya, how about the fact that i go in for lab work and then get a notice in the mail telling me my Cd4 is X and Viral load is X but then i go to the doctors office or talk to his nurse on the phone and they tell me that "No its actually Y, where would you come up with X at?" maybe from the paper YOU sent me! But then we retest and it turns out to be Z instead of either.

I really am losing my paitience for this clinic. I thought since i was diagnosed and the one thing everyone has told me to make sure i am allowed to take an ACTIVE role in my health care, i should be allowed to make some of the decisions on which medicines i want. Does anyone else have issues with this? i know i have posted some of the annoyances i have with this clinic in the past and as i come up on my 2nd Anniversary of D-Day i wanted to gather a little input from anyone else out there.

Can you switch to another doctor? It seems like you're at an impasse. If there is some sort of clinic management you may want to talk with them too since your doctor isn't listening to your side effect complaints. The controlled substance bit is trickier, but will be easier with doctor who is listening to your complaints.

I hope they will let you switch doctors , I picked mine from a pool of 7 , I'm lucky enough to select at the V.A.

My doctors are not flexible about what meds I take , took me 8 years to get off of Reyetaz to Prestia , my life changed over night

As for " Happy Pills " , they give them out like candy

I hope you find a great guy to live happily again , Poz - Neg relationships do work , I've been with my Neg partner for over 30 years .

On your thought of moving ....... Be careful what you do ! I packed Myself and hubby up and moved halfway across the county to a lovely little town of 57 people because I THOUGHT it would bring more peaceful and happy times . As it is a nice quiet place , I often wish we had stayed in Las Vegas . I hope to hear from you soon with some happy stories , you do sound like the HIV has not taken over your life , that is good

I would switch dr's. Some doctors if they don't see you often will be hesitant on giving those types of scripts. My dr very seldom will question anything if I ask for it,I've Been seeing him for 15 years though

I've screamed this loud and clear many times and will repeat it again. Doctors are service providers and not demigods. It took me many years to finally accept that I own my health and will not tolerate anyone who dismisses my concerns and refuses to discuss options and allow my input.

If you feel a med change is in order and your doctor won't entertain that option, then I assert there is a shortage of communication. Everyone of my specialists are professionals that I feel a connection with.

My lack of owning my treatment almost cost me my life and I have no problem being assertive with any professional. I even fired my ortho doctor almost immediately after surgery for a broken leg. I didn't like his attitude and we didn't click at all. I found him arrogant and dismissive so I dismissed him and sought out another whom I gained respect for.

I couldn't agree more, wolfter. It's SO important to have a mutual understanding, respect and good rapport with your doctor/provider. Sometimes it's not that you or your doctor are bad people or not understanding, sometimes it's just a personality conflict, like any two people in life. That's ok...but it means it's time to move on.

I feel very fortunate that both my primary care provider and my ID provider have been so wonderful to me, just such pleasant visits and they're so professional and yet personable and kind. (I mean I hate that I HAVE to be there, I'd rather not lol)

But even with differences of opinions...such as yesterday, I must say I was kind of dissapointed my ID doc was not very keen on the choice I would have had for one-pill, once per day medication regimens. However, she very thoroughly explained to me her reasoning as to why she thought two-pill, once per day regimen would be better. She also asked for my feelings, opinions and input. I really felt she listened to me. I know how some doctors will just say "no, you're doing it this way". So frustrating. And especially when there's evidence to back up something isn't working or you're not happy with something. Time to move on.

So...i have news! I'm taking the job in Spfld, MO! I'm so nervous about it. I haven't talked to my DR or Caseworker yet..technically all I've done is try to plan the move in my head and set the wheels in motion. I haven't even contacted any agencies there to let them know I'm coming!

Its not so much i accepted a new position, as more I'm being promoted within my current company. The work thing isn't what scares me. Hell work will be the easy part! Its the starting over, away from everything and everyone i know. Finding a new Dr, new friends everything.

I know i should be thru the roof excited about it, and some days i really am! Especially when i talk to my new boss down there about how great the store is. But then time passes, and the impending OH S*** starts to lurk its way back in.

It really didn't help that when i made it public on fb announcing to everyone that id gotten the promotion, that my mom, sister and this kid I've been spending time with, all FREAKED THE EFF OUT on me for it. No "Hey Congrats! or We are proud of You!" was more like "WTF!" only much worse. All i wanted was some support from the people i love the most but they just couldn't do it. Trying to play the "Oh you shoulda told me first!" when frankly, 2 of them knew before ANYONE knew and my sister was literally about to walk down the aisle in 12 hrs. I was NOT about to bring any kind of stress off her or take from her special day.

And now the girls at work are being shady to me too, i consider it Jealousy. Bc I'm leaving to be the first person in my store Promoted to Mgmt in UNDER a yr, it took my current asst mgr 2 yrs to get promoted and that's only bc the girl who will be my new boss got promoted and transferred out to where I'm going. Frankly, when i compare the current asst (who i report to) to myself, I've got that chick beat. I work harder, case and point! And the other girls, well ill miss a few of them, the one who is starting shit is just jealous that shes been there as long as me (as a janitor i may add) and just now got promoted to sales bc she called HR and complained that "our boss was disrespecting her as a black woman!"

Frankly i call BS on that, the girl is A GIRL not a woman, she has no respect for us or anyone elses authority. She is a lousy sales associate and a worse janitor. She is just a shit starter in my opinion who is showing her immaturity to her own benefit.

Why cant i just be happy for myself about this? If anyone from that area of mizzou reads this...will u please msg me! it'd be nice to have someone there ahead of time to talk to about the VAST questions i have about Poz Life there!

Anywho...i need to go to bed, its almost 5am and I'm tired. I gotta stop waiting so long to log back in and give updates!